Question:
Female, 15 years old, Deletion subtype
Vivimos en Riohacha, La Guajira Colombia. Mi hija tiene escoliosis por lo que se indica hacerle cirugía quiero saber los riesgos que está cirugía puede ocasionar. Gracias por la atención y apoyo.
I live in Riohacha, La Guajira, Colombia. My daughter has scoliosis, and surgery has been recommended for her. I would like to know what risks this surgery may involve. Thank you for your attention and support.
Nurse Lynn’s Response:
Scoliosis surgery in people with PWS can be an important step to improve posture, breathing, and overall comfort. Like any major surgery, there are risks, but with good planning and the right medical team, these risks can be managed, and the surgery can bring long-term benefits. Some risks are the same as in anyone having spine surgery: bleeding, infection, problems with anesthesia, or hardware issues. For people with PWS, there are a few extra things to watch for. Breathing problems are more common because of sleep apnea, low muscle tone, or extra weight, so some people may need extra breathing support like BIPAP or CPAP after surgery. Hormones such as growth hormone, thyroid, or adrenal may need adjusting to help the body heal. People with PWS may also have trouble explaining pain or following activity rules, so extra support and planning are important.
Other possible issues include trouble controlling body temperature (getting too hot or too cold), a different sense of pain that makes it harder to notice problems, and a higher chance of blood clots due to low activity. Doctors can help prevent these by checking hormone levels and encouraging safe movement after surgery. Constipation, slow wound healing, or temporary changes in behavior may also happen, but with careful planning you and the team can be equipped to manage these. The good news is that scoliosis surgery often brings big improvements. Straightening the spine can reduce pain, make breathing easier, and help with movement and independence. Families often notice that once healing is complete, their loved one feels stronger, more comfortable, and more confident.
While recovery may take longer for people with PWS, the results can greatly improve quality of life.
Resources:
There is also a way to ask the medical team at the International Prader Willi Syndrome Organization (IPWSO) who may also be able to help advise or put you in contact with physicians in your area.
Below are some additional handouts for you to look at:
https://www.pwsausa.org/wp-content/uploads/2022/11/Postoperative-Monitoring-of-Patients.pdf
https://www.pwsausa.org/wp-content/uploads/2023/01/Anesthesia-and-PWS-Loker-2022-1.pdf
https://www.pwsausa.org/wp-content/uploads/2023/01/Anesthesia-complications-study-2022-1.pdf
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Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.